The One where I Video Blog for the First Time!

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Review: MigraLens Migraine Glasses

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I’ve suffered with migraines ever since I was five, a side effect from having had viral meningitis. For many years I received no help or pain relief, and made do with cocktails of OTC drugs and overmedication to get me through.

As the years went by, it began to emerge that I have several conditions that can all cause severe light sensitivity, aka photophobia: ME, Keratoglobus (a degenerative conditions of the cornea) and even Ehlers-Danlos Syndrome. It’s not surprising that my migraines increased in frequency when dealing with that and working with computers!

So, when my Mum noticed a small article in the Daily Mail’s You magazine she immediately thought of me.

New research has indicated that the blue and red parts of the visible light spectrum are the cause of photosensitivity, and with 40% of migraineurs finding that light can trigger an attack that’s really something that shouldn’t be ignored.

There are many different kinds of light which can cause photophobia: sunlight or natural light, glare, flickering lights, fluorescent lights, TFT monitors and tv screens, the list goes on. Personally, natural light is my biggest problem, but I’m rarely comfortable during daylight hours anyway. I think that explains my tendency towards being a night owl.

MigraLens have a lens filter which absorbs both red and blue light, as well as being 100% UVA & UVB absorbing, instantly making them far better than many so-called sunglasses available on the high street.

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At £45 for a pair of glasses to fit over my high-index prescription glasses, I felt they were not too dear to give them a try. I used the easy online ordering system and they were with me within 2 days. Upon trying them on, I knew within a few short minutes that this was easily the best £45 I have ever spent. The constant ache I always had behind my eyes dissipated, and my temple throbbed less than usual. A small pilot study by the migraine charity, Migraine Action, found that 70-90% of participants found MigraLens glasses effective in sunlight and reflected glare, and in fluorescent and halogen lighting. 91% rated them as better than other tinted lenses they had tried for migraine. 87% of participants expressed their intention to continue wearing MigraLens glasses after the study concluded.

I’ve now been wearing them daily for 2 months and whilst I have had migraines in that time, their frequency and severity has lessened considerably. Any time my eyes feel tired, sore, aching or I get that sharp pain in them when the light doesn’t agree with me, on they go and I can continue with my life. Having had eye problems and photophobia for many years now, I am not embarrassed to be seen in shops or on cloudy days wearing sunglasses, so I’ve put my MigraLens glasses on at work, in meetings, training sessions, doing my weekly shop, or even just around the house. They help me so much. And when I don’t need them, I just slide them to the top of my head, ready for the next time I need to put them on, which can be several times a day. The great thing is, they look so good people don’t realise they’re helping me, I’ve been told I look like a celebrity with them on!

And in all this, I’ve not worn my prescription sunglasses once, which is great, because I needed to update my prescription, and at nearly £500 a time for my high-index glasses, that’s a huge saving made. Especially as at less than a tenth of the cost, my MigraLens glasses have helped me more than any sunglasses ever have.

I’ve not been asked to write this review. I honestly believe in this product for the relief it has brought me, so much so that I have written this to try and spread that relief to all my fellow photophobics. If you decide to try MigraLens glasses, I hope they bring you as much relief as they have for me.

Visit MigraLens.com

“Damn Right I’m good in bed… I can sleep for hours!”: The A-Z of Chronic Sex

This article has been written as a part of the Chronic Babe blog carnival number #30, Let’s talk about sex!

Sex AND chronic illness?  There are so many variables to consider.  When I told my Mum I was writing this she remarked that she had always thought I was not really into sex.  I replied that it was not about not being into it, but more about how much energy and effort it takes to have sex.  I’m certainly not afraid to go there, as the following post will probably show.  Here follows 26 points about getting jiggy when you’re a sickie, based on my own experiences, conveniently arranged as an A-to-Z guide:

A is for Anorgasmia

Diving in straight at the deep end, anorgasmia, or the inability to achieve orgasm, is an unfortunate side effect of many medications. Frequently these include the antidepressants and anticonvulsants given to chronically ill people in order to regulate their sleep. Many people I have spoken to have told me of the dilemma they face when they are in relationships or are having regular sex, whether or not to take their medication. Their choice: have pain and orgasms, or no pain and no orgasms? Each one has quite obvious pros and cons. The conflict is so great that it has led me to describe is as “Sophie’s Choice for Spoonies”.

But remember, sex is not just about the end goal – orgasm. It is about intimacy, and sex can be completely enjoyable without orgasm.

B is for Blow Jobs

Oral sex can be a great way to have sex using less energy. And yes, it is sex! As well as being easier on the energy levels, blow jobs can avoid issues with pain and uncomfortable sensations. I know that sometimes I can be in so much pain I can’t bear to be touched, but oral sex can be a great way to be intimate without much bodily contact. And when orgasms occur, they can actually reduce pain levels (See E is for Endorphins)!

C is for Contraception!

I really cannot stress this one enough – if you are chronically ill, having straight sex, and are not actively trying to get pregnant, for the love of Bob, USE CONTRACEPTION! There is a wide range out there surely one compatible for everybody, both hormonal and non-hormonal. You can use more than one too – I like to use a combination of my implant and him using a condom. But then, I am a victim of an unfortunate condom malfunction and am now a single mother to a 3 (“Almost 4, Mummy!”) year old. Honestly, if you are chronically ill and need a lot of sleep, and you don’t have a strong support network then use contraception until you feel you are ready to never sleep again. The added benefit of barrier methods is that they also protect against Sexually Transmitted Infections (STIs). (See Y is for Your Health)

D is for Disruptions

When you’re having chronic sex, you will need to prepare for a lot of disruptions. A jaw may lock up, a position may cause pain, you may simply get tired and need a break for a little while. At these times you can keep things going by cuddling, kissing, stroking, massaging or even talking dirty to each other. But don’t feel bad if you (or your partner) needs to stop – see it as a way of raising the tension and delaying the moment.

E is for Endorphins

Oh how I love these little guys! Wake up with a stiff neck? A headache? A hangover? (Ok, I’m going back several years here!). Or has it been a long day and you need a boost? Ache all over? I have found a very natural cure for these things. Whether it be through penetration, oral sex or masturbation, orgasms (if you can achieve them) bring with them a rush of endorphins, the body’s natural painkiller. And with that comes some relief from pain. Some of my most productive times are after an orgasm, though unfortunately my current single status means that these days I get my endorphin rush from eating spicy foods. Any excuse for wasabi peanuts! I wonder if they could prescribe a Vindaloo followed by orgasm as pain relief?

F is for Frequency

How often to have sex? Well, how long is a piece of string? It really is dependent on how you feel and what your symptom status is at the time. Sometimes you may feel more unwell and not want to do anything, other times you may want to have sex every day, or more often!

Don’t feel pressure to keep up with your friends, especially healthy ones. Remember that sex is about you and your partner, no-one else, and is about intimacy. As I have already said, sex isn’t about orgasm, and it also isn’t about penetration. It is simply about intimacy, and if you think about it, you may find that you are already very intimate with your partner, even if you are not having ‘traditional’ sex and humping each other at every opportunity. Frequent sex doesn’t always equal intimate sex.

G is for Getting in the Mood

This is a really individual thing and it is important to take into consideration the needs of both you and your partner. Personally I have simple needs, liking lots of kissing, touching and if you hadn’t already guessed, intimacy. But the things that work for and turn on one person, can make the other unwell.

For example, once upon a time a boyfriend gave me a massage. Massage helped him a lot and he had become good at it himself. However, the massage he gave me resulted in a massive fibro flare which left me barely able to move the next day. He also used the only oil he had – lavender, assuring me it would be relaxing. That was how I found out lavender and me do not go well together – my glands went straight up and I had an instant pounding headache. Needless to say, sex did not happen that night!

Getting in the mood may involve kissing, cuddling, touching, and massage, but also planning, role play, dirty talking (maybe even a dirty text or phone call at work can build anticipation). The world is your oyster! You know what turns you on, so communicate it with your partner and put it into practice!

H is for Humour

If you’re having chronic sex, you really must have a sense of humour. Most people I know who are chronically ill are ok with bodily functions in general (well, we have to be), and sex, when you think about it, is hilarious. An ex always used to say, “Sex is so… biological.” And he was right. It’s messy, sticky, sweaty, and FUN! Laugh about it! I have been through the utter hilarity that is two sick people trying to have sex against a wall, fanny farts, and even being farted in the face whilst giving head. Sex is a scream, laughter should be a part of it.

I is for Impotence

So we’ve done anorgasmia, but what about when a guy can’t get it up? I can’t speak for a man’s feelings, as I don’t actually own a penis, but as a woman I have learned it is really, really, really important not to make a fuss about it either way. Sexual dysfunction such as this is a sad side effect of many of the drugs that are given to the chronically ill, and it does happen. It’s not personal.

Sex doesn’t have to be about penetration though. I have been with guys who have appreciated understanding, hand jobs and blow jobs at these times. Sometimes I have found the simple intimacy of a cuddle and understanding can make the world of difference and change a bad experience into something wonderful, no penetration necessary!

J is for Joints

If you’re a bendy like me, then at some point during sex you are going to find yourself saying, “Let me just put X joint back in!” It happens. Sometimes it’s painful and requires stopping, other times it will just necessitate a small shift in position. Positioning is everything, so do go easy if you are hypermobile. Spooning can be a good one, and missionary, as long as you don’t open your legs too wide, or you will be using my post-sex catchphrase, “Ow! My hips! Help me put them back!” Try to avoid positions that put strain on your wrists, elbows and shoulders – I have dislocated wrist bones from supporting my weight whilst being on top!

K is for Know Your Limits

A mantra for all areas of life, really. Don’t try swinging from the light fittings if you’re really not up to it. Always try to be aware of what you would be able to cope with at the time, but also the effect that it will have on you afterwards, and don’t push it!

L is for Lube!

I cannot stress this one enough. Lube is key. I will talk more about the physical reasons for this later (see V is for Vaginal Dryness), but for now let me warn you about lubes… Many water-based lubes contain a substance called glycerine. This is not anything sinister, it is simply a form of sugar. However, for many who are chronically ill, especially those with ME and Fibromyalgia, Candida (otherwise known as thrush) is a big problem.

Candida albicans, a yeast overgrowth in moist areas such as skin folds, the gut, vagina and beneath the foreskin, thrives on sugar. Adding sugar to an area which may already be prone to microbial overgrowth due to immune system abnormalities is a recipe for disaster. I only need to use KY jelly and I feel itchy and sore afterwards. Sugar?! In MY vag?! No thanks!

So I did my research, and discovered the joy of silicone based lubricants. Safe to use with condoms, these lubricants contain no sugar, claim to be hypoallergenic (I’ve not had a problem, nor have heard of anyone having had one), and last a lot longer than water-based lubricants. They are so slippery that a little goes a long way, so they last longer too. I really can’t extol the virtues of silicone based lubricants enough. Do look into it yourselves!

M is for Masturbation

I’m pretty sure we’ve all done it at some point or another. Usually in private. But masturbation can be an enjoyable part of chronic sex. It can start out awkward and embarrassing, but I have found masturbation with a partner can be extremely hot. It can be used in place of penetration, or to complement it. You could use it to show your partner exactly what you like. You and your partner could pleasure yourselves together, or equally, could manually stimulate each other.

There are many different applications which can enhance things, and most importantly, even if you suffer with anorgasmia with others but not on your own, it could be a way of making sure both of you achieve orgasm.

N is for Not Tonight, Dear!

Sometimes there are just times when sex is really not on the cards. It is important to firmly establish boundaries and make sure that your partner knows that no means no, not guilt trips and begging. (See U is for Understanding)

O is for Organisation

I know, I know! Organising sex sounds as sexy as making a shopping list. But making sure you are prepared for sex can save a lot of energy. Things to consider when organising a ‘sex survival kit’ – condoms, lube, any toys or aids you might want to use, a bottle of water, painkillers, wet wipes… the list goes on. Also, planning your sexual encounters can be sexy in itself, creating anticipation by planning sex in advance, heightening the mood throughout the day with flirty/dirty messages and calls can result in mindblowing sex later on.

P is for Positions

One time when discussing my favourite positions, a friend remarked, “Only other chronically ill people can understand why chronically ill people have 2 favourite positions.” They were of course, referring to our need to have positions for ‘low energy’ and ‘slightly more energy’ days. I have mentioned above, spooning and missionary can be great for girls who are low on energy. Her on top can be great for if he is low on energy. If you are both unwell, then periodically changing positions will also help matters, by giving the other person a bit of a rest.

Q is for Quickies

Never underestimate the power of a quickie. Sometimes a quick one can be less draining on the energy levels than longer, slower paced sessions. Quick sex in an unusual setting can be enjoyable and can add a bit of variety if you feel that you health keeps your sex life in a bit of a rut.

R is for Relationships

Relationships can be hard to maintain when you have chronic health conditions. For that reason, some people find it easier to have sex without being in a relationship. Whether you choose to have sex within a relationship or not it is essential that you have a partner that understands your needs, and that it is safe and consentual. (See U is for Understanding)

S is for STOP!

I have found in my experience that when chronic sickies have sex, they are often eager to please, but at the same time afraid of ‘breaking’ the other person. This can lead to stopping what could be really good sex out of fear of getting too tired. I know I have a tendency to stop guys in case they get too tired, and have had the same done to me.

What I have found helpful, is talking honestly and establishing that when someone says that THEY feel too tired, then is the time to stop. You could try using a code or safe word, or you could just simply ask, “Could we have a break for now?” However you do it, it is important to remember that consideration for others feelings is all well and good, but if you have the understanding that you can call a halt to things when you need to, then it is far more likely that you can get lost in the moment and have a really good time.

T is for Toys

When I talk about toys in bed, I’m not talking about the cars and Lego my son leaves in mine! Sex toys can be great for when you or your partner is low on energy but wants to keep the intimacy going, for when you need to ‘take a break’ during sex, or just for whenever you want to use them. There are a number of toys available these days that can accommodate almost every need, and are usually delivered very discreetly. So have a search on the web and see what takes your fancy!

U is for Understanding

I’ve been banging (excuse the pun!) on about this throughout this piece, haven’t I? I really do want to stress the importance of understanding. For the most part, I have been lucky to have understanding partners, who have accommodated my needs so that I have been able to have sex, or at least intimacy, even during my bedbound times. Talking honestly is key. If you feel your needs are not being met then you need to talk about it to change things. It’s also important to be understanding of your partner’s needs too, whether they are sick as well or not. They may feel frustrated by the limitations, or even that you are not meeting all their needs. In order to establish true understanding, don’t grit your teeth and get on with it (perhaps not the best phrase to use), let them know exactly what you can and can’t do. If you are in a relationship that is loving and supportive, then understanding should be easily achieved through honest communication.

V is for Vaginal Dryness

I think this must be the female equivalent of impotence. You can be as willing as the day is long, but if your Va-jay-jay is drier than the Gobi then it’s not going to work, and forcing it will cause pain. This is where women are much luckier than men – usually cracking open the lube will result in an improvement in matters and make things more pleasurable (See L is for Lube), but if that isn’t enough, you can visit your doctor for prescription treatments which may help to ease things.

W is for Weakness

Sex can be incredibly tiring, and I know that I can often feel incredibly weak afterwards (and I like to think I leave my partners weak at the knees too!). This is why I prefer to have sex at night, as I can go to sleep straight after, but really, as long as you have time to rest afterwards then go forth and go at it!

X is for X-periment!

Oh, that was tenuous, wasn’t it?! As I have said previously, good sex, whether it’s chronic or not, is all about experimenting and finding out what works for you. In many ways, despite the lack of energy, I think that having a chronic condition has meant that I have had to actively seek out work-arounds to make sure I have the best possible sex. Experimenting is all part of the fun, don’t be shy, give it a go and try something new!

Y is for Your Health

No article about sex would be complete without a note about sexual health. As I mentioned before, using condoms can reduce the transmission of STIs. I feel it is important that the chronically ill have a duty of care to themselves to maintain their sexual health, simply because we do not need any more infections on top of what we already deal with! If you can get out and about to have a sexual health check every now and then, then do.

Z is for Zzz!

Sex can be a great sleep aid. I said earlier I like sex at night because I usually get a restful night’s sleep afterwards. But whatever time you like to have sex, if you need a snooze afterwards, go for it if you can. There’s nothing nicer than curling up with your partner and dozing off.

And on another note, if you got through all of this, then you may need a “Zzzz!” yourself!

MEAW 2011: Living with M.E. – I’m Tired

I’m not normally one for writing pieces specifically for awareness dates.  I prefer to see awareness as an all-year-round thing.  But this year I am feeling particularly beaten down by the whole chronic illness thing.  What follows is my perspective on living with M.E.

People hear the term ‘M.E.’ and instantly jump to conclusions.  Perhaps they remember back to the days of ‘Yuppie Flu’, or remember that it is also known, rather misleadingly, as Chronic Fatigue Syndrome.  However they think of it, one assumption stands out head and shoulders above all others: Tiredness.  M.E., to the outside observer, is not much more than tiredness.  Yes, I am tired, but probably not in the way you first think.

  • I’m tired of the lack of understanding of what M.E. really is.  From professionals, from laypeople.  M.E. is much more than just being tired.  It is not the same as being tired from a full day at work, a session at the gym, a night of partying.  M.E. is a complex neurological condition, affecting the whole body in a multisystemic fashion – the immune system, endocrine system, gastric system, nervous system, the list goes on.  If it’s a system it can be affected.  Imagine waking up with a hangover and coming down with flu at the same time and you might have an inkling of how I feel every morning.
  • I’m tired of the lack of medical recognition and understanding, fuelled by the lack of funding into biomedical research because the purse strings are held by the psychiatric lobby.  I’m tired of the purely psychiatric approach to the ‘treatment’ of M.E., the idea that we are simply depressed and deconditioned and need to push ourselves more.  Guess what?  I’ve been pushing myself to keep going for over a decade and I’m not better yet!  What does that tell you?
  • I’m tired of this lack of medical understanding leading to a lack of general understanding, causing negative attitudes and stereotypes to remain highly prevalent – that people with M.E. are lazy, malingering, attention seeking, workshy and scrounging.  We are none of these things.  I, personally, am tired of being told that I sound like I’m enjoying being ill, or that it must be nice to finish work early.  I finish work early so that I can go home and sleep.  Life passes me by.  Yes, I really enjoy that.
  • I’m tired of having to fight to get any help whatsoever because of the huge lack of understanding.  It took 3 and a half years to get my autoimmune thyroid disease (likely a consequence of having long-term M.E.) diagnosed, from my first abnormal blood test until it was formally diagnosed, even though 3 (yes, 3!) doctors had been happy to say yes, there was a problem, but no, I couldn’t have help.  It took 6 and a half years to have my fibromyalgia diagnosed, from the time it was first mentioned, to the time it went onto my notes.  The local M.E. clinic has been running for 6 years, and I am still unsuccessful in my campaign to be referred there.
  • I’m tired of this lack of help meaning I have to resort to self and over medicating with drugs that should not be combined.  But as my chemical sensitivities mean that I am unable to take opiates and opioids, and am not offered any other forms of pain relief, alternative or otherwise, I have no choice but to be irresponsible or face not working and struggling on benefits.
  • I’m tired of having to hide my illness, of not talking about it for fear of being told I’m malingering, whining, enjoying it.  When you have a problem, do you talk to your friends and family about it?  I expect many of you do.  Why is illness any different?  We, as humans, make sense of our issues by talking about them, it doesn’t mean we enjoy having those problems!
  • I’m also tired, when I do manage to talk about things, of being told to ‘Think Positively’.  There is a special kind of positivity almost exclusive to the chronically ill and disabled.  It is what keeps us going.  Sure, we all have our moments, but we keep on going.  If we weren’t positive we probably wouldn’t be there talking to you in the first place, we’d be hiding away at home, or maybe worse.  It’s not sparkly-unicorns-farting-rainbows positivity, but it’s a real kick in the guts to be flippantly told to think positively by someone who doesn’t even begin to understand the inner strength required to just exist.
  • I’m tired of not being able to get out much.  Of not getting to meet new people, have a chat, have a laugh, without feeling unwell from a noisy, crowded, busy environment.  Of not being able to have a drink socially, or a meal out because I would be unable to lay down after eating to let my blood pressure regulate.  I’m tired of my friends being mostly online, too far away, unable to travel to me or me to them.  It should be easy to make friends, but instead I have so many variables to consider that it is easier on my body to stay home and stick the tv on.
  • I’m tired of the well-meaning, interfering comments and advice.  I don’t look unwell?  Well, bully for me!  Perhaps if I looked a bit worse there would be a bit more understanding.  You wouldn’t expect as much of me as you do.  Please don’t ask me if I’m better yet, either.  Believe me, if I was better, I’d be skipping down the street, singing it at the top of my lungs like Loony McCrazypants.  If I get better, I will tell you.  In the meantime, your question puts pressure on me to conform to society’s expectations  of healthiness.  Yes, I should be better by now, but I am not.
  • Similarly, I am tired of hearing the latest quackery on how to get better.  No doubt I’ve already heard of it, or even tried it before, probably to no avail.  Unless I hear about it straight from the mouth of a qualified medical professional whose expertise in the area I trust, I won’t be wasting my money, energy, or hope.
  • I’m tired of having to explain myself, of having to write things like this in the first place, using even more energy I don’t really have.  I shouldn’t have to explain all this – why life with M.E. is so much more difficult than people think.  Tired of explaining why I am tired of having M.E.

Yes, I’m tired all right.  Is that what you mean when you say, “Everyone gets tired sometimes!”?

The Visible Invisibility Project

Life can be tough when you’re unwell.  For the majority of people, illness is short-lived – they quickly recover and get on with their lives.  However, for many this just isn’t the case; their illness stretches out over weeks, months, years, decades even.  They are the chronically ill, often disabled, house and bed bound by their condition(s).  Life becomes even tougher, being ill day in, day out.

What makes it worse is that often the chronically ill don’t look ill at all.  Or they may only get out and socialise when they feel (and look) well enough, on their very best days.  “Oh, but you look well,” is far from the reassuring, well intended compliment it was meant to be.  Instead it becomes a a panful dismissal of the suffering endured by people with chronic illness.

Because of this, many of the chronically ill and invisibly disabled people in society choose to hide their conditions rather than encounter disbelief, dismissal and prejudice.  They become invisible.

The knock on effect from this is that it becomes much harder to identify others who are suffering.  The advent of social networking has been a massive breakthrough.  Personally, I have met more people suffering like myself in my 8 months of using Twitter daily, than in my entire 29 years of life and illness.  On Twitter, we use the #spoonie hashtag to identify and reveal ourselves to each other, a reference to the Spoon Theory at ButYouDontLookSick.com.  We become visible again.  In real life it is far harder to find other #spoonies.  Whether or not it is in hyper or meat space, when #spoonies do meet each other  an instant safe space is created, a place to share and receive the support we deserve, without fear of judgement.

It is fear.  Fear of judgement, of having to spend precious energy explaining, and defending, ourselves and why our lives aren’t the same as others, of being told it is all in our heads, that we can think our way out of illness, or worse, being told the latest quackery on ‘how to get well’.  It stops people from standing up and being counted, from saying, “I am a valuable member of society.” Which of course, we are.

And that’s really what the Visible Invisibility Project is all about.  It’s a space to say “This is me, I am valuable.”

We all have different sills, talents and abilities.  Whether you work or not, are a parent, are childfree, are a partner or carer to someone else who is also unwell, whether you have your own business, group or project, a degree, are creative.  Whatever you have achieved whilst battling against chronic illness is worth celebrating, however big or small.

So please stand up and be counted.  The VIP isn’t political, I don’t intend to set the world alight, but I want it to work.  I want us to show the world we are everywhere, we have skills, talents and lives.  We struggle, but we keep on..  No matter what your condition, if you have ever felt invisible, join in, show others that they’re not alone, and that like the initials of the project, we are all VIPs.

The Visible Invisibility Project – http://visibleinvisibilityproject.blogspot.com

Love & hope

So this is Normality? Chronic Illness, Simon Cowell and Getting Real

I do remember when I received my wake up call.  I was in the consulting room at the Central Middlesex Hospital in London, sat opposite the most awesome Rheumatologist I have ever known, Dr Alan Hakim.  By this point I had been chronically ill with actual diagnosed illnesses for five years, with many years of struggling for a diagnosis beforehand.  He had just diagnosed me with Classical Type Ehlers-Danlos Syndrome.  I can’t remember the lead up, but I made the statement, “I know I’ll never be normal.”

He looked at me, unblinking and said, “What is normal?  Define normal.”  And I couldn’t.  “Normal is what is normal for you,” he explained, and I realised he was right.  There was no reason to sit and be bitter about my diagnoses, that now I had been diagnosed with EDS, I knew that the likelihood of my previously diagnosed ME/CFS ever getting better was now a very remote possibility.  All I could do was to get on with things, work out what it was I wanted to do.

It was at this point that he asked me had I thought about considering a career in Health Psychology?  I had told him I had studied Cognitive Science as an undergraduate, but I had never heard of this discipline.  He said he thought I could use my experiences to work in the field, and I resolved to look into it.

At the point of writing this, I have a Masters in Health Psychology.  I have been trying to get work as an assistant Health Psychologist, but competition is fierce, and with my accumulation of diagnoses since I first started on this path I am really not up to that kind of work at the moment.  Maybe that will change, but I don’t dwell on it.  The ultimate goal is to do a distance learning doctorate in the subject, but my current finances definitely do not allow for this although I know exactly what university offers this and the structure of the course.  Instead I have been trying to find ways of putting my education as it stands into good use.  That was always my aim and I seem to have been somewhat derailed.

I think that I was right when I previously said fear was holding me back.  But it’s actually not fear of failing in the classic sense, I’m actually scared of people misunderstanding my viewpoint.  I do approach my conditions differently, I have since the consultation I described above.  Years ago I used to regularly get into discussions where people did not understand that I am on the side of those with chronic illness, but I do not believe that there is no hope, as long as you are willing to help yourself as much as you can.  More recently I have bitten my tongue about some of my more extreme viewpoints, but I actually think that they need to be said, because somewhere out there someone else is thinking those things, and thinking that they too are the only one, too scared to speak out.

But you know what?  I really do think I have something valid to say.  I don’t do dry self-help, I don’t do Zen, but I do believe in getting real about living with chronic illness.  Earlier today I heard someone say they admired Simon Cowell for his brutal honesty and his absolute belief in his own opinions and abilities.  I need to be more like that.  I need to be the Simon Cowell of chronic illness.  It’s time to be honest, be practical, get real.  This is my experience.  This is my normality.

Finding my voice

I have a dilemma.

Over the new year, my parents both individually suggested, again, that I share my story.  This has been something that has been going on for several years now, and comes up with each new diagnosis I receive.  They think that I might inspire people living with chronic illness and perhaps help a little.

To tell the truth I do want to do that.  But I am having problems with so much of it.  Firstly, I’m not a writer.  I’m actually a speaker.  Ask me to make a presentation, be it to 1 person, or 1000 (and I’ve done both) and I’m in my element.  Ask me to write something and I’ll stare at a blank screen.

So often I open up my computer and sit watching the cursor blink in the ‘New Post’ box.  I know what sort of thing I want to say, but I struggle to find the eloquence with which to say it.  A mere quip aimed at me in a supermarket can result in a super fast witty comeback.  Just what is my problem?

Is it too much pressure, that my desire to write all these things that I have been mulling over in my head for years is actually stopping me from just sitting down and doing it?  Likely.  More likely is my crippling fear of failure.  It has to be good.  I’ve got to be good at something.  I see my friends making the best of their lives with chronic illness, they all seem so talented.  What’s my talent?

If I listen to the general consensus, my talent is that I ‘just keep going’.  Well, isn’t that what you do?  Why do I seem to attract such comments about this from people?  This is why people tell me to write it down, to go out and speak about it.  But I just don’t understand.

I’ve always had ‘something’ wrong with me.  So, it wasn’t diagnosed until I was in my teens/twenties, but it was always there.  Consequently I’ve always been tired, I’ve always been in pain, I’ve always been coming down with one thing after another.  Apart from the drama in the few months prior to my diagnosis, I have always stuck close to my baseline so that I don’t have huge ups and downs.  There is no sense of loss, because I never lost anything.  I never had it to begin with!  Hmmm… this doesn’t sound like a particularly scintillating story, does it?  Just. Keep. Going.  Oh there we go, written in 3 words.  I must have attended the Widdecombe school of authorship.

Conversely, I could never tell people how to take care of themselves.  I stay up too late, I don’t eat healthily, I ignore my food intolerances more than I should for the sake of satisfying cravings (and my budget), I forget my pills, the list goes on.  OK, so I might think about things a little differently (Ok, a lot differently), but that’s not enough, is it?!

Then there’s the approach to take.  When I was pregnant I didn’t read “What to expect…” etc.  I read a hilarious week-by-week account of pregnancy.  Facts interspersed with humour.  My Dad thinks I should take this approach, being a fan of my lie-down comedy via Twitter, and even suggested a working title of, “Oh f**k, what now?!”  My Mum prefers a more autobiographical approach, telling my story in a more straightforward manner and offering advice through my own experience.  Well, what to do?  At least they are of the opinion it is worth writing about.

I just find I currently spend so much of my energy trying to live ‘normally’ – working, looking after James etc. that I don’t have the energy to sit and write.  I have notes.  Lots and lots of notes.  I make them at work when things are slow, or when a thought strikes me as worth considering.  But by the time I get home it just gets added to the pile and I’ve got to think about hoovering, or changing beds, or laundry, or what to cook for dinner.  I tried to set up this blog to keep my hand in, to find out what my style was going to be, I’ve tried soapbox.  Can I even make having chronic illness funny?  I worry it’s only possible if I go into the realms of TMI.  Do I go there?  I struggle to even write here at the moment.  What is the point, exactly?  10 years ago I wrote reams, my story was all but told in full, people were reading it, commenting, admiring.  And nowadays I have even less energy and 100 times more pain than I did back then!

I’d dearly love to be at home all the time so that I could organise my thoughts enough to get up and running.  But I need the money, and I could hardly write about how to keep going if I’ve packed it all in just so I can write about how to keep going.  Not when there aren’t any guarantees in this world.  Does the world even need another book on the matter?  Oh hello, there’s that fear again.

Hardly inspiring, is it?

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